Topics

cf
Dear ladies and gentlemen, At the heel prick of my son, they discovered a CF gene and in addition an increased value of something. We had to do a sweat test. My son was 3 weeks old at that time. Is this reliable? I read on the internet that it is reliable from 4 to 6 weeks. They also took a biopsy from his rectum. Nothing was found. The conclusion is that he is a carrier. What does this mean for him? Me and my husband are being tested now.
22.12.2014
Gene mutation 2896insAG
Hello, I have a question, namely my friend has the mutation 2896insAG and we do not really know what to do with this mutation. Is this a stop mutation? Do stop mutations always end with X? If yes, the first question is already answered. Can you tell me something about this mutation? The other is dF508. Many thanks and with best regards, V.
22.12.2014
Cataract
Hello, I am 50 years old and I have to undergo an operation of the eyes on both sides. What do I have to take into account, concerning CF, e.g. antibiotics?
22.12.2014
Fibrosing colonopathy
Dear expert team, I would like to know, if there are any differences between preparations concerning the fibrosing colonopathy. Before I used to have Kreon®, however had to switch to Pangrol® due to the costs. Is there probably a stronger tendency to fibrosing colonopathy when taking Pangrol®? Many thanks for your answer.
22.12.2014
Top sports and CF
I am a rowing coach and working on the selection for my rowing team. One of the girls has CF. I cannot find anywhere on the Internet whether sports on a high level can be combined with CF and if there are things that I should take into account. She just had her annual checkup, and that was very good (including a fast running test f.e.). She is 21 and she used to row as a junior. Rowing is obviously a strenuous excercise. Is it not too risky for a girl with CF? Where can I find more information about this? Are there people who have experience with intensive training programs for patients with CF?
22.12.2014
Care of CF people
Hello, I wanted to know how the people affected by the cystic fibrosis are taken care of? Thank you
17.12.2014
L558S
Hello, Could you give me some information about this mutation? Is it frequent worldwide? Do the homozygotes have a particular phenotype? Thank you
17.12.2014
Chronic colonization with Staphylococci
Dear expert team! Request for help for a very worried mother: my daughter (16 years old) had until about one year ago, a very good lung function (97%) and a very good general condition. As she is also an extreme allergic patient, one has the creeping worsening of the lung function not regarded to be so dramatic. In summer 2014, we have however decided to do a bronchoscopy not to miss anything at all (lung function 84%). This looked really horrible - mucus everywhere - germ finding Achromobacter, Staphylococci, Haemophilus (no Aspergillus) - admission to iv-therapy - after iv-therapy no change of the lung function - on the contrary, middle and small airways nearly completely closed - and at once Aspergillus in the sputum - therefore suspicion of ABPA and therefore start of anti-fungal therapy (itraconazole and cortisone) for 3 months - however acutally germ findings still unchanged - that means chronic colonization with Stapyhlococci by all means, Achromobacter would allegedly not going to disappear anymore anyway - now they want to start additionally a long term treatment with flucloxacillin: My worry: long term treatment in this high dosage (is given in double dosage as normal) - what do we have to take into account? How often controls of the sputum because of aquisition of Pseudomonas, how often control of liver enzyme values respectively kidney values? What about the growth of fungi, then? Does one do long term antibiotic therapies in case of chronic colonization with Staphylococci? I am really despaired and have in the meantime really given up the hope to bring my daughter again on the good lung function values! I know that a therapy is always a double-edged sword - for one thing good, for the other bad - however I do not want to miss anything, if one could do probably it another way! Thank you while waiting for your appreciated opinion.
17.12.2014
IV worsening of the saturation
Dear team! I am suffering from CF and I am 48 years old. Since I was 25, I do regularly about 2 times a year an iv-therapy. Unfortunately, it is often like this, that the lung function stays the same, however the oyxgen saturation is going to be worse and worse at the end. I have however not the impression to have too much mucus. However I have rather the feeling, that something in the body is not really well changed anymore. Blood cell count is super, everything's o.k. ...the physicians are of the opinion, it could be stucked secretions....After 3 to 4 weeks at home, the lung function stays the same and the saturation does not go under 93% during normal walking...at the end of the iv-therapy drops at least to 88%...I do not understand it...just had 2 times 3 million units of colistin and 3 times 4 g of tazobactam/piperacillin for the iv-therapy....do you know this phenomenon? Do you have some advice? Many thanks to the team!!
17.12.2014
Acinetobacter baumanii
Hello, I have been informed from my CF center via the telephone, to have the above mentioned germ. It would be well treatable with Cotrimoxazole respectively with Colistin per inhalation. As I have no other symptoms except my chronic inflammation of the sinuses, that is always severe in this time of the year, I ask myself, if this is really sensible. The result came about 3 weeks ago. I have been told, that I do not have to do any additional hygiene standards here at home, either, e.g. physiotherapy etc. I am 52 years old, have otherwise often the finding of Staphylococcus, several times also the Stenotrophomonas and 2 years ago also the MRSA, and because of this I had to return early from the rehabilitation. The above germ is new for me and if I seach in google, it does not sound too good to me. I am curious about your advice. Many thanks
17.12.2014
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